21 THINGS TO SAY TO THE MOM WITH MULTIPLE SCLEROSIS WHEN YOU DON’T KNOW WHAT TO SAY

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1. We Don’t Make a Mountain out a of Molehill

You think you can imagine our pain? Now multiply that amount by 10. No matter how sympathetic you are, studies have proved that people tend to underestimate other people’s pain. Chronic pain by default is hard to imagine unless you have experienced it in your life. It’s invisible, but it is always there. We urge health care not out of hypochondria or the need for attention, but because of our severe physical state.

2. We Need to Balance Actions Carefully

We use the Spoon Theory: We have a limited amount of spoons each day we could use for different actions. Getting up, getting dressed, taking a shower, driving, walking, picking up the phone — each action requires us to use one of our precious spoons. On good days, we finish with a few spoons left, so we can do something fun. On bad days, we borrow spoons from the next day and need extra recovery afterwards. So if we suddenly cancel our plans with you or tell we can’t do it now — it’s just because we ran out of spoons today. Try to understand this.

3. We Struggle to Find a Good Doctor

Sadly, a lot of health care pros lack knowledge in pain management because it is rarely part of their training. We often visit numerous specialists before receiving a proper diagnosis and wait months to years to see a real pain specialist for treatment. Doctors often fall victim to the cognitive error of underestimating another’s pain and a small number of doctors are willing to take the legal risks involved in prescribing powerful pain pills.

Same goes with the nurses. Finding a good one who can really understand and help us relieve the pain is hard! Luckily, there are some online schools like Sacred Heart University that are training future nurse leaders to overcome these issues in the future and provide better care for patients.

While you may think it’s crazy, we’re willing to travel further to find a good nurse with this kind of training and rave about it when we find one.

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